An open letter to a close friend who opened his house to me in one medical crisis. Now I am asking if he could help in another. This is the story of what has happened the last four months and the last week in regards to my Mom. This is being written after visiting and helping in the hospital here in Fresno.
“As long as we have hope, we have direction, the energy to move, and the map to move by“
Hong Kong Proverb
“When you’re at the end of your rope, tie a knot and hold on.”
The Lord is close to the brokenhearted and saves those who are crushed in spirit.
Psalm 34:18 NIV
Feast your eyes on all that farming in Central California!
This is the second letter I have written you. Here is the first. Hey bro, I wanted to start out by asking you something. Do you remember what you did on the evening of January 11, 2012? My Dad went into the hospital under the auspices of a stroke. As the news got worse and worse you invited me into your home at 2:00 in the morning. So I drove my car onto Capitol Hill in Washington, D.C. and went into your apartment. I remember you hugged me in the doorway of your apartment. I cried fearing that I was going to lose my Dad. You sat down with me in the middle of the night on the couch and told me you can’t imagine what I was going through. Remember that James? You didn’t preach at me. You didn’t give me hell. You sympathized and you opened and shared your life. You hugged me while I wept in the middle of the night in your apartment. That made a major impression on me. On Friday as I traveled back to Fresno, California I was thinking on all that. That was then, now my family has another medical crisis that is difficult and threatening. Let me give you some background.
I wrote about the issue here, here, here, and here. My Mom was diagnosed with vasculitis about 5 years ago. Things disintegrated rather quickly in late 2016 with my Mom going into the hospital. She had issues with her cryoglobulins, low grade lymphoma, and she was diagnosed with diabetes. I was shocked when I saw her in the hospital in Christmas. I spent my Christmas break helping out in the hospital and living more or less in a hospital room. I did what I could then I went back to Washington, D.C. and then I came back to Fresno around January 19 for about 3 to 4 days. The hardest part of that visit is that my Mom didn’t recognize me at first. That was hard to go through. Then I left and promised my Mom I would come back. I ended up coming back to Fresno sooner when someone I knew died after a long battle with cancer. I helped my Mom, fed her at home, combed her hair, let her hold my hand and more. I helped my Mom quite a bit.
I’m Exhausted so is My Family
My Mom’s diabetes has been hard to manage. It has been hard to draw blood and my Mom’s health is very fragile. My sister found my Mom not doing well and her health was getting close again to where she was when she went into the hospital in December. That was on March 12, 2017. She gave Mom some medicine, and the doctor told her not to give her anymore insulin. My Mom has the 72 hour insulin and that would carry her over. The doctor told her to watch Mom and make sure that she was alert. On Monday morning the office would provide an even more sensitive glucose meter. My sister called me upset and we talked about it and she asked me to call her throughout the night to help check on Mom. So I stayed up later and called my sister at 2:00 a.m. EST. Mom was good. Then I went to bed. I got up at about 4:30 to call my sister again. And just as I was getting ready to call my sister texted me that Mom was okay and responsive. That is how emotionally invested in this situation I am in James. I am so close to things that even though I am on the other side of the country I am still emotionally attached and can anticipate and feel things and remain connected subconsciously. Its weird to say that. Then as I was getting ready for work I was getting ready to call my sister and she said that Mom’s responsive and well. All was well, and my sister and I got my Mom through the night. However things would take a turn a week later.
On Sunday night March 19, my sister found my Mom unresponsive and slumped over on the toilet. She called 9-11 and the paramedics came to the house and took my Mom to St. Agnes Hospital. It was midnight in Washington, D.C. and I was getting ready for bed. Then my phone rang and my sister called. By her tone I knew it was quite serious. She explained to me what happened and how Mom was in the hospital. They were nervous. They feared she may have had a stroke or something more. After all her glucose is fine. My sister told me that the situation was developing and I said I would stay up and asked her to call me back with more news. I knew this was going to be another late night. I got on Twitter and blasted every one I could possibly think of and ask them to pray for Mom. A couple of hours later my sister called back and informed me that Mom had sepsis. It was the same thing I had when you visited me in the Fairfax INOVA Hospital if you remember. Mom had an internal bleed and the doctor thinks her open wounds have allowed bacteria to get into her blood stream. Plus her PIC line into her chest was infected. They proceeded to give her antibiotics. What was encouraging is that Mom’s blood pressure and vitals are fine. For the next few days it would be another day by day situation.
On Tuesday March 21, 2017 my sister called me at work early in the afternoon. She was distraught and told me that the doctor had spoken to them and told them that he thought Mom had an uphill battle. My Dad and my sister also agreed to change her to do not resuscitate. She was upset and I calmed her done and pointed to the positives including her vitals. I then spoke with my Dad and asked him. “Do you want me to come out?” My Dad was unsure. He thought I should come out if things got worse. I also told him that my prior visits helped Mom and that I could come, spend time with her and visit, and perhaps get her back on trajectory and then return to Washington, D.C. My Dad said he would think about that. After dealing with all this I basically said “fuck it” and left work early. I spent so much time that day on the phone and listening and helping my family.
I am exhausted James. This has been so emotionally draining. I can’t tell you how much time I have spent on the phone. Then my sister would call and ask if I could get a message through to the hospital or doctor’s a couple of times while they tried. I made several phone calls from D.C. to the hospital in Fresno. The toll on life has been heavy. I don’t enjoy life right now. I am out and about and this weighs on me. I can’t focus or concentrate at work and spoke with management and let them know what is going on. Its been hard to sleep and I cringe at times when the phone rings because I fear the worst. I have been in touch with family daily. I would say that I am talking to my sister 5 or 6 times a day. Then I am trying to speak with my Dad more. And I also call my Mom – when she can speak. Its been a hard situation and I am exhausted. Likewise in travel, traveling back and forth has also been expensive and its been draining. I can’t believe how much I have traveled in the last 3 months alone. We are all drained so emotionally. Actually work and this blog has allowed myself to put my back against something. But I am being the cheerleader for the family. Directing them to be positive, and explain why I am optimistic. I also want to be realistic. As I tell my sister, “I am not trying to blow smoke up your ass.” My Dad was indecisive about me coming home and I decided to purchase a plane ticket and come home and help out.
Sung at Holy Spirit Catholic Church on March 25, 2017
How my Mom is Doing
On Friday night when I saw my Mom in St. Agnes she saw me and smiled. She recognized me which is good. We spoke for a while. This is a day by day event. I held her hand and she kissed it. We spoke for a while, my sister, Dad and myself taking turns with Mom. After all that was happening I expected to see the worst. A few days previously on the phone my Mom was crying in pain and telling me she was only going to live for 2 more days. Then she would change her mind and say she didn’t want to die. Last night was deeply encouraging. On Saturday morning and afternoon things were challenging though. I was at the bank paying my mortgage when my sister texted me. Mom was asking where I was, and I told her I would get to the hospital as quickly as I could.
When I got to the hospital I saw Mom and played with her hair. I kissed her on the forehead and she was talking about trains. It was weird. I told her that all my trains are in the Washington, D.C. area. I held her hand and told her of all the things she has to look forward to. Me possibly getting married, more Christmases, more Thanksgivings, and future events. I told her that she was going to pull through and that I would do whatever it takes and help her get through this situation. My Mom held my hand and was kissing it. She apologized for being ill, and I told her that there was no need for an apology. I am committed James to doing whatever I can to helping my Mom out. My sister and I both discussed it and we agreed to help out and make sure she doesn’t end up in a nursing home. When I was an infant I struggled to breath, and later I would be diagnosed with asthma. My Mom walked around and held me when I was an infant trying to help me breath. Now the roles are reversed and in this season of life I feel absolutely committed to helping her and walking with her. I want to comfort and be there for my Mom even in this prolonged illness. I went to Holy Spirit with my Dad and spoke with Monsignor Pat McCormick, he is supposed to come by and visit. Sunday afternoon was hard James. My Mom was crying out in pain. She resisted and when I was giving her water she pulled out a couple of eyebrows, bit my finger and almost broke my glasses. She also started to scream obscenities at me. I tried to think of a way to calm her down and played classical music on my Android. That seemed to do it. Eventually my Dad and I left so my Mom could get some rest. All my Mom’s nurses are great James.
What the Doctor is Saying
Saturday afternoon the physician treating my Mom spoke with me for a few minutes. The doctor said that they are doing everything they can. He said they are frustrated and that my Mom ebbs and flows. She starts to get better, then she stops, then things get worse. The core problem is that she needs to eat more. She needs to eat nutrition. My Mom is malnourished and if you see her in the bed, if looks like she got out of Dachau or some other concentration camp. The doctor said her vitals are good which are encouraging. I casually mentioned that I was planning on going back to DC in a week, and the physician said to wait another week or so. I was disheartened to hear that from the treating physician. I was frustrated and spoke with my Dad about it. My Dad knows how the doctor feels about it.
My Fears with My Mom and My Request for 5 to 10 more Years
My fear James is that we’re going to lose my Mom. I have cried several times about that fear. I have cried on March 21, in my car at work when I left upset over what was said. I cried on the plane flight coming out here. I don’t want to lose my Mom. I think of all the times and memories that have been made. And I want to make more. My late grandmother Isobel was diagnosed with colon cancer when she was 76. It was a close call and we didn’t know what would happen. I remember my Mom visiting in Montana and helping out and coming by and visiting. My grandmother went on and lived for nearly another 25 years and died at 100 years and 4 months. Today I think of the memories that were made and the times that were spent together. When she finally died I had much more peace because of the spent time that was with her. So its with that said can I ask you and your family to pray for the following?
- Can you pray that my Mom has another 5 to 10 years?
- Can you pray that she would have a good quality of life?
- Can you pray that she eats the food that is brought her and that she consumes protein?
- Can you pray that she gains weight and muscle mass, and is well nourished?
- Can you pray that any delirium in the hospital come to an end?
- Can you pray for my Dad, sister and myself as we carry all this day in and day out?
- Can you pray that we have strength to get through this?
- Can you pray for her vasculitis to be controlled?
You know what James I have to say this. I honestly struggle with prayer and when I do pray its for other people. I don’t pray for myself. So can I ask you to pray for my Mom in this situation? Can Addy also pray hard for my Mom like she did for me? At the end all I want is another 5 to 10 years to spend with my Mom. I told my Mom that there is the potential of me getting married and more and all the opportunities that she still has to look forward to. She cries and kisses my hand when she is lucid.
The nurse putting on a blanket on Mom
When this is all Over Can I Visit you in Kansas?
I have this request of you James. I miss you deeply. But can I come and visit you when my Mom is better and this is over? I am drained and I need a vacation when this is all over. I can’t think of any other way to recharge the batteries then to hang out with you and work on your family farm outside Salina. I enjoyed feeding your livestock and hanging out with your cattle. I also enjoyed standing on the Kansas plains watching the sun just blaze over them in the early morning hours. Plus there is also Cozy Inn in Salina which is a must to visit when one passes through Kansas. But there is another reason to visit as well. I can visit Scott in Kansas City, Missouri and hang out with him for a couple of days. I could chill with him and see his Nickel Plate Road models. So when this is all over with do you mind if I come out to Kansas and chill with you a little bit? After being a caregiver and traveling and helping out for 4 months, I would like to be a Kansas farmboy for a few days! Until that happens can you help me get through this one as well? I love you James please continue to check in on me as this situation plays out. I appreciate your friendship James. Thanks bro…though we are long distance and as I write this from California consider this a hug. Please James…ask those you know to pray for my Mom.
March 27, 2017
I went to the hospital. I liked the nurses treating my Mom. Kind, tender, and loving. My Mom was in pain when I arrived, and I didn’t know, I tried to kiss her hand and she screamed out in pain. I followed up with the nurses. Also getting the documentation for work as I am dipping into emergency leave that my company has. When the pain medicine kicked in I retreated to the cafeteria and had a couple of hours to kill. I wanted to let Mom rest. Wrote the Elverson post in the downtime. Later on I was waiting by the elevator and I heard a mother explain the to her kids their situation with their grandmother. She was 92, not recognizing people and on the decline. She was also out of leave and in a leave without pay status. I felt awful as I could also identify with the pain her family was going through. Its where I am right now. After dinner I went back to the hospital. My Mom didn’t recognize me. I Tweeted and asked people to pray for her. When we left I swung by the chapel. I don’t pray to God except for other people. I still don’t have that prayer issues resolved. I asked God while sitting in the chair in the dark for 5 to 10 more years. I don’t want to lose my Mom.
March 28, 2017
Spoke with boss and explained to him what the doctor said. I am waiting for documentation from doctor so I can get paperwork turned into HR. I also called United and canceled my ticket, Since I went through Hopper I was charged $250.00. United said that they will reimburse me. I need medical documentation as well. How is Mom? Conflicting reports from the nurse. One nurse said she is sweet and loving. Then my Dad called and my Mom in delirium tried to bite him. What will happen to me when I go? I will find out. Had some friends from Fresno who want to get together. That touches me to have a base I can lean upon here in Fresno during this hard time.
Yesterday afternoon and evening went well. Mom responsive, not in pain, vasculitis and diabetes in control. My Mom thanked me for being there and asked to hold my hand. She kept kissing it and telling me she loved me. I kissed her multiple times on her forehead. Mom looked at me and told me to save my money. I smiled, that is the Mom I know always telling me to save my money. Mom was in good spirits and we talked. Before leaving the hospital I went to the chapel and asked that tomorrow (March 29) would be good also. After leaving the hospital I sent out the following text to several close friends.
Thanks for your prayers today. It was a good day. Mom was not in pain. Diabetes and vasculitis managed. No delirium she recognized me, my Dad and sister. She is slowly gaining weight. Now at 102. Thanks for helping carry my family through this. Can you please pray for tomorrow to be good. And for my Mom to not be in pain, no delirium, and to manage her diabetes. My prayer is that in a couple of days she will be at 105 and we can crawl out of this mess. Thanks! I love you!
March 29, 2017
My sister called me as I was getting ready. I was getting ready to leave for the hospital. Mom is in pain and they are giving her fentanyl. I will see how she is doing when I arrive.
March 30 -31
These past two days have been hard. My Mom has been in pain. I heard my Mom cry when they changed the dressings to her open sores. The look on my Dad’s face was horrific. I waited by my Mom’s bed or when she slept me, my Dad and sister went to the waiting room or cafeteria. I went to JC Penny last night to get some more clothes. When the doctor told me to stay I came half prepared. Last night as I was trying on clothes I realized this is the first time in going to the store here in Fresno that my Mom was not there with me. That broke my heart. Today I was supposed to have lunch with a couple of guys I knew from high school. Then this morning my sister called me frantically. Mom had another stroke she was taken down to get a CT scan. My sister told me to come to the hospital and I came wearing dirty cloths. I just grabbed what was on the floor and ran. When I got to the hospital my Mom had stabilized and her vitals had improved. I had to cancel on lunch and stayed with the family. Now I am heading back to the hospital.